Why was I stronger DURING treatment than I am now?
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Smart: isolating is the perfect word to describe it. Good luck with your surgery!
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Hi everyone,
I haven't been on this board in quite sometime. I can not begin to tell you all, especially those that are newer to this board how much hearing from others helped me in my process.
It has been just over three years since diagnosis. I had 6 surgeries in just under three years. Mostly due to my first bilateral mastectomy with expanders developing an infection. Three surgeries later and finally implants and I continued to suffer and realize my body was just not accepting a foreign body.
Last December I had the DIEP surgery and even though it was a BIG surgery and a tough recovery I did very well. I didn't have any post op infections or problems. In March of this year I had my second stage (and I am now done). That was an easier recovery.
A month or so after having my phase 2 surgery I felt like my life began to return to "normal", albeit a new normal. I found my energy, my thinking and focus came back and I went on to have one of the best summers I have had in the past three years.
Early this fall I now in hindsight, see that I saw signs of falling back into depression and anxiety. But, I had a lot going on and still had a ton of energy so just tried to "work through it". My daughter had her wedding in early October and my husband and I stayed to take care of our grandson who was 2 for several weeks after the wedding. They live across the country from me.
Upon returning home in late October I fell into what has been a terrible depression. Very low energy, cloudy thinking, little ability to focus, pretty significant loss of appetite and the return of daily anxiety about reoccurence.
I see my oncologist every six months for what feels like a rather useless visit. We review my medications, my post chemo/surgery/treatment side effects (which until this summer when I felt physically much improved) have been difficult. She has never done blood work or a scan. I have a gene mutation (not BRCA) and a HUGE family history of multiple cancers including a lot of breast cancer. I had an agressive cancer, stage 3 IDC with unclear test results regarding HER2. They treated me for HER2 positive because one of three tests showed an overexpression of HER2 but two other test were ambiguous. I was also treated with strong chemo (similar to that of triple negative cancers) in case I wasn't HER2 +, which meant that I was then triple negative.
My oncologist says that with HER2+ the two and three year mark are significant and especially five years.
I guess I am just feeling blindsided by being back in a place of such fear. I so wish they would just do one scan, a comprehensive one that proves I have no cancer remaining anywhere. But, they tell me symptoms are what I need to pay attention to. Which leaves me feeling frightened every time I have a new or lingering pain or headaches, which I have had a lot of the last month.
Anyway, I started reading these post again and thought maybe I should come back and let all of you know what is happening. Maybe some of you have had a similar thing happen. I think what bothers me so is that I thought I was OVER it. I had a really good, up, energetic, positive summer and I think I thought this stuff was done with.
Thanks for all of you being here.
Julieho
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Julieho...glad you came back. It's good to vent. Sometimes being busy is an escape...for me anyway. I hear you about the scan. I'm pushing for a MRI because I just have to know if it's really gone. Tomorrow marks my one yr since dx and I'm freaked out and I don't even know why. This past year has been so hard on my marriage too but being so busy (daughter off to university, 2 moves, work, treatment and now more tests...)...I didn't have the time or energy to notice.
Have you asked for the blood work, scans? I'm hoping my MO will understand that mentally we need to know what's going on. My body lied to me once...the trust is broken. Good luck to you...we are hear for you!!!
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Greetings - Although I haven't read all of the posts I just want to say thank you. I visit this discussion from time to time and I find it so helpful to read about your experiences. Just last week I felt like I was reliving the anguish I felt when I was first diagnosed about three years ago. I was a mess - I hadn't felt such intense feelings at the one-year or two-year mark! I'm anxious before routine check-ups, but nothing like I experienced last week. "Flashbacks' are probably common - thank goodness for this discussion where we can freely talk about them. It's discouraging to have to keep silent about the reality of post-treatment issues in order to fulfill the expectations of family and friends that we are fine, all better, etc. I realize friends and family have good intentions, but as I say thank you to a compliment about looking good, etc., I'm thinking, "Oh if you only knew ..." !!!
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My MO will only consider a scan if there are symptoms of a recurrence. I'm tempted to say I have pain in one of the usual places where mets occur just to get a scan. They say that one of the reasons for NOT doing scans is the anxiety they cause. What about the anxiety of living in limbo? At least after a scan, we'd know we were in the clear for the moment.
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Hey Ladies,
I made it through my surgery. Today was the first day I could unwrap and shower. There is a lot of swelling, so I cannot really tell what is in there. My implants are 450 cc on the left and 475 cc on the right. The right is that wonky radiation side. I guess I am lopsided, as my original right side had more tissue as well. The underarm area looks a bit of a mess right now...but I can already tell a huge difference on that extra skin/tissue. Also, my new boobs do not feel like rocks. I have a long way to go, but I think it will be ok.
I know discussed the scans and blood work before. My MO does do blood work every three months to look at the CA 27.29 and does do a PET Scan each year. I guess I would rather have the small amount of radiation than not have the scan. I have pretty good insurance. She has told me if insurance rejects the scans, they usually do not do them because of the expense for the BC patient.
On a funny note, I had to fly to another city for work in November. 1st flight, I was not scanned. On the way back, they did have me go in the scanner, and then pulled me aside. I assumed it would be my port or my expander...she walks up to me and spend a lot of time looking at my left wrist. I am guessing the agent working the scanner said LEFT CHEST, not left WRIST. Oh well, I let her look at my wrist and moved on.
Welcome back to those who have been away for a while. I so enjoy everyone here's point of view. You are wonderful strong women.
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SmartassSmurf...so glad it went well for you! Now sit back and hopefully relax and let things heal. :-)
I'm off for yet another mammo and US on Thursday and an MRI has finally been scheduled for Jan 14th. I'm a bit freaked of possiblely being claustrophobic...I'm unsure. This is to check the thickening in my good breast and a burning bump (cyst?) in my bad breast. It's been a struggle to get the MRI so I'm hoping for some peace of mind. Apparently the MRI machines are so busy...my test is scheduled for 6:30 am...meaning I will be up at 4:30 am to get to the hospital. So worth it though..
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JJ-if you tell the doctor, they will order something to help you relax, usually 10 mg valium. It works wonderfully. YOu have to have a drivier with you though, if they give it to you....You take it about 30 minutes before your procedure.
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Smartass, glad the op went well, and hope the recovery is smooth.
JJ, I think MRI must be one of the busiest in my area as well. I once did one at 11:30 pm!
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Smart, I'm glad your surgery went well. I hope you end up being happy with the results.
JJ, good luck with the MRI. I so hope they don't find anything.
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Bought myself a present for my Cancerversary. I can't believe an entire year has gone by....and it's still not over..
Our DD went off to University last year and I feel like I'm having a delayed reaction to an empty nest. I'm not loving it. It's like I missed real life for a year. Things I was supposed to be doing just didn't happen. My DH and I have never been "alone" in 24 yrs...he has been beside me though this past year...but it's been hard. He doesn't understand why I'm still "not myself". I'm also really doubting my decision not to have a mx because I'm plagued with cysts which means scans, appointments and constant checking of these boobs. I'm just so tired of being wired up...
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JJ, I love your gift to yourself. That says it all. I'm 2 1/2 years out from my diagnosis and still not really "myself." Tell your DH that. Going through this changes you, and it doesn't all go away at the end of active treatment. There are still lots of appointments as you said. For you it's scans and biopsies of the breasts you still have. For me, it's been the reconstruction process, dealing with depression and other side effects from the meds I have to take for 10 years as well as continuing follow ups with the MO and RO. I wish it would all go away, but it doesn't. My body is changed in more ways than not having real boobs. I'd venture to say yours has too. A lot of things have changed. Fortunately, my DH has been understanding. I hope yours will be as well.
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I just found this thread so I'm new. I finished radiation Sept. 15 after having chemo for 5 months, double mastectomy and expander placement. I'm going to have the final implants put in on Dec. 23. I too feel a lot worse mentally now that cancer treatment is over. I feel very alone too. Mostly what I feel is anger and I hate that because it's not who I want to be. I'm just angry at what cancer has stolen from me personally, and it also brutally stole my uncle who I was very close to last Sept. I somehow sailed through treatment mentally and now I'm a mess. I'm angry that it feels like the doc's have just booted me out of the system because "it's not cancer related" even though it's the side effects of the cancer treatment they prescribed. I broke a rib and had to twist a doc's arm just to get the scan that discovered it. I didn't even know radiation could weaken the ribs and I don't remember actually breaking it. I've had so many complications from the treatments that have required so much treatment that it feels like I haven't really finished cancer treatment at all.
The rest of the world has moved on and so my support is gone. I don't want to look like I'm just throwing a temper tantrum over lack of attention, but I need support now more than ever. I feel unable to tell anyone that, and if I do mention it, (when they ask how I'm doing), there's not much concern. I feel shattered and broken and very alone. I smile and tell people I'm fine because they expect that and no one wants a negative person in their lives. I think cancer justifies negativity even if it's temporary. I'm always telling people, "It's better than being dead.", but inside I'm crumbling.
Is this the PTSD eveyone talks about? I used to work in a mental hospital so what I know about PTSD involves severe anxiety, flashbacks, intense trigger reactions, strong startle responses, etc. I'm not having that. I don't see the word CANCER and become hysterical. I'm truly trying not to be so negative. I have a therapist and a shrink, but of course that can't erase what I just went through over the last year.
Sorry that got long.....
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Cat Laddy 44. Sweetheart. You are not alone at all. It's been a long ride for all of us. I sailed through Cancer (given what could have happened). Recovery? No one but us knows about. Being strong wains after a while. I'm not here every day and others are not either, but we care. The battle is exhausting. For now? Love and comfort from those who understand.
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Thank you. It's nice to know this is normal and that people care. I'm not on the boards often either, but sometimes I just need to connect with people who get it.
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catlady, we definitely get it! I resonated with everything you listed. Like you, when people ask how I am, I just say fine or ok. It's better than being dead, but some days it doesn't feel much better. Come back and rant any time. It's ok if it gets long. It's ok if it's negative. I think our society has a cult of positivity which is not always realistic.
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catlady, it does get better, but its important you take care of yourself. If you give the world the happy face, that is all they will know. Find a "best" friend or relative who will have your back. Make an appointment with a counselor and let them know exactly why you are coming in. My guess is a lady therapist is more understanding in this situation. The aftermath of treatment is kinda like a natural disaster. We have the fight or flight response and when all is done there is a ton of clean up. The crappy part is the doctors don't put this into our treatment plan. Even my primary doc passed me along because she didn't want the responsibility of my mental heath at that point.
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BB,
Yes, that is how I feel too, exactly how I feel. I am trying to work out if it is depression as separate from breast cancer or is it breast cancer and depression? I have had a lifelong depression problem I am sad that you too feel this way, it's a torturous and exhausting way to live.
I think I had a low level depression before bc, but bc slammed into me and the depression got much much worse.
2tabbies, I too think the cult of positivity is damaging, and I will not indulge in it or I turn away from people who won't do 'real'. I too say fine and ok when asked, I think most want us to be fine, it's much less effort for them.
I like this thread, because I can be real.
How's everyone feeling about Christmas?
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I have given up now BB - am actively seeking an exit strategy.I am going through the motions, and just feel rubbish all the time, I see no reason to keep on trying, I will not be missed......not really......
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there are only two options BB!
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Lily: I feel like I lost 3 years of my life. Please do not do anything that may harm you! We are your support! I am still in the midst of medical issues-I have had pneumonia since October. I am on third round of antibiotics and the fluid is in my right lung - same side as radiated. Sending hugs and support. LiL
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I have been hanging in there all year with one thing or another, and animals are not enough reason to keep going, I have been volunteering and had dogs living with me temporarily etc etc........but even animals now are just a pressure and a demand, I have no significant relationships family wise that I matter enough to, so many bailed out, and you can´t live for other people. I struggle every day........seriously and feel guilty saying this as there will be people on bc.org who desperately want to live..........but I feel worn down, even simple things are so unneccessarily complicated. I have failed at having bc well, failed at being a good support to others on bc.org, failed as a parent, as a partner, as a person......an i am too damned weary to keep trying
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Lily, do please listen to what all these lovely ladies have said to you. We are all here for you, remember, you are not alone.
If you feel that coming here to vent and let all your emotions out is not enough, have you considered getting profesional therapy? It could make you feel much, much better... A therapist who has had experience with people with cancer would be especially helpful to you.
Besides that, if you feel desperate right now please don't hesitate to call a hotline: 1-800-SUICIDE; 1-800-273-TALK; 1-800-784-2433; 1-800-273-8255
We are giving you hugs!
The Mods and the BCO Team
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Lilly, I noticed you are on the same hormonal as me, have you considered changing to a different one? I too feel so much sadness and anxiety since I started it and that just isn't me. As to your comment about failing others, I think it's the other way around. You have to focus on yourself, you can't control other people. Also, where do you live? See if others from this site are near you and maybe you can get together with others who completely understand and get you. What has happened to you, to us, is not fair. It's OK to say that! You fought so hard to live, don't give up.
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I stopped taking Exemestane in July this year, have been given Anastrozole but have not started taking it.......have a broken bone for first time in my life.........I live in Spain.......small world over here and there are no bc support groups, believe me i looked for them......
I do have a cáncer psychologist via a national charity, her take on me is i am a perfectionist and hard on myself and have had a very hard time and still do with all that happened (like still a further 3 years to wait to recon) and that i shoud be applauded for keeping going. I told her how i feel last sesión
I have struggled so much and feel sooo worn out.............its like a sentence for a crime i did not commit
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It was a 2 year battle to even get them to admit that recon is actually a right and that i need it, I guess i am tired of battling, even Little things now wear me out, sucks for you too BB, is there no charity that can help you? I was referred by health system here as they have no services themselves for cáncer people.
I realise I have nothing to look forward to................
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Lily, if you live in Spain, and feel you need to talk, don't hesitate to call the "crisis number" called "Teléfono de la esperanza": 902 500 002. They have very supportive phone counsellors.
We're sorry you are struggling with all this right now, but you'll get through it all! We're here for you!
The Mods
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I get it Lily, but I hope you will hang in. If you still care enough to read things here and post, your heart is still in the game. Don't give up, it's not time. Love, Gracie
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When I was first diagnosed (at stage 4 no less!) I went into shock and just sat there waiting to die. After about 6 months, I realized I wasn't going to crawl out of the hole on my own, so I asked to be referred to a counselor, as I thought I had PTSD from the shocking way the diagnosis was delivered.
I now have a fabulous psychologist / counselor who diagnosed me with "Adaptive Disorder". Apparently it's very like PTSD, but when the Traumatic Event is ongoing (and in my case will end with my death.) He is guiding me through the minefield, knowing that one day I will step on one!
He works at my local hospital, and visits are free. He was appointed as a Health Counselor, one who deals only with patients with "real" physical issues (not just mental health), and has now been appointed specifically as a cancer counselor. At the moment he is starting to guide me through the process of "getting my affairs in order" before the inevitable end. I definitely could NOT cope without him, and wish you could all have a Gerard in your lives!
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Lily, I don't know if I have any answers, but I wanted to tell you that I am listening. Have you considered an anti-depressant? You don't have to feel this way.
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